Ruby Slippers for Stella and this Dorothy
My mother never once told me she loved me. She never hugged me, touched me as little as possible. I didn’t know which bothered her more, my adoption or my disability, but knew their commixture made me unlovable. The first time I felt motherly arms reach out to hold me just as I was, to see me and tell me I was good enough exactly as I was, it was 2014 and I was fifty-nine years old. The woman reaching out over the internet to hug me was thirty-two, half my age, a full year younger than my own child. Despite the age difference, despite the fact I grew up in Toronto and she came from the bush town of Stawell, Australia, I had far more in common with my virtual mother, Stella Young.
We’re both tiny red-heads with expressive hands and foul mouths. We both became teachers, writers, and comic performers. She did stand-up; I did improv. Her one-woman show, Tales from the Crip, won comedy awards; I coached winning teams at the Canadian Improv Games. Her heart’s desire was to write the novel she never had a growing up, one featuring a disabled teenage girl. My first novel, When Fenelon Falls (Coach House, 2010) is exactly that, the story I needed and never had, the tale of fourteen-year-old disabled rebel Jordan May March set in the Woodstock-Moonwalk summer of 1969. I gave Jordan my disability. Stella was born with osteogenesis imperfecta; I was born with congenital birth defects in my feet. We both had multiple corrective surgeries.
We both eventually concluded we weren’t the ones who needed correcting.
When I heard her TED Talk, (June, 2014), “I’m not your inspiration, thank you very much,” I played it until I could recite it. I cried and grinned for a week. It was as if I’d been struggling with a half-completed jigsaw puzzle all my life, then Stella said, “Sweetie, I think this piece goes here. And, darling, try that one there.” My pieces fit. I gained focus, saw the big picture. High and proud in her wheelchair, she declared, “I am not here to inspire you. I’m here to tell you that we’ve been sold the lie that disability is a bad thing. That it makes you exceptional. It does not… I’m not anybody’s inspiration porn.”
She used the word porn deliberately: “it objectifies one group of people for the benefit of another group of people.” I instantly had language for the impossible task I’d always felt was my job, one at which I’d always failed: “to inspire and motivate the able bodied.” As Stella put it, to exist for their benefit, so they could look at me and think, “It could be worse. I could be that person.” I now had a name for every time Facebook asked me to “like” a child amputee tying his shoes, a Down Syndrome prom queen, or a blind high school graduate. I finally understood why I didn’t “like” the celebrity athlete who ate lunch with a bullied autistic child. In inspiration porn, the disabled person is reduced to the object, the prop. What the able-bodied really want to “like” is their beneficent moment of inspiration, wherein they reach down from on high to help and patronize us.
Did Stella swallow that lie? Did she get silenced by its shame?
Nope. She ridiculed the shit out of it. She gave me the language to begin my memoir.
With wit and wise-cracks, she debunked the medical model of disability, which claims we are disabled by our physiologies, and embraced the social model: that disability is a social construct, that we are disabled by ableism. It’s a social justice issue. It’s a matter of access, not attitude. As Stella succinctly put it, “No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing before a bookshelf and radiating a positive attitude is going to turn all those books into braille.”
I began calling myself a crip because she did. Originally the term made me cringe, made me see gangs and potato chips. Stella called herself a crip, because naming herself reclaimed her power.
And the more her vocabulary came out of my mouth, the more I agreed with her. I read every word of the online magazine she edited, Ramp Up, and hunted down broadcasts of No Limits, the community TV show on she hosted for eight season. Her advice, “Disability doesn’t make you exceptional, but questioning what you think you know about it does,” empowered me to examine all the reasons I’d spent fifty years pretending not to be disabled. Because Stella had no shame, because she denied the very notion of shame, I could shed mine.
I hear Stella’s voice every day as I work on my memoir in progress, So Lame: My Fifty Years in the Disabled Closet. She insists that I claim my life in my body, pushes me past self-pity to self-love. This is the book I need as an adult, one that explores the intersections of ableism and ageing, one that asks the world to see me just as I am. It’s about empathy, not inspiration. It’s the kind of book Can Lit needs to expand the definition of diversity to include the twenty percent of Canadians who have disabilities. I would not have the the words, or the stamina, or the daily cussing courage to write it, without Stella.
I regret she will never read it.
Five months after her TED talk, in The Sydney Morning Herald, (November 22, 2014), Stella published “Dear Eighty-Old Me,” a letter imagining how her disabled life would be rich and full, knowing, “I wasn’t wrong. The world wasn’t yet right for me.” Two weeks later, at thirty-two years young, she was dead. Stella died of an aneurism on December 6, 2014, the day Canadians commemorate the Montreal Massacre, the 1989 deaths of fourteen young women murdered at l’École Polytechnique. For me, the two losses will forever be entwined.
But don’t say her early death inspires you. She’d laugh in your face. If you get it, you’ll understand what was inspiring: her glorious red polka dot shoes, the abandon with which she danced in her wheelchair, her ability to make us laugh at discomforting truths, and most importantly, her vibrant affirmation that disabled people are so very ordinary. “I promise to grab every opportunity with both hands, to say yes as often as I can, to take risks, to scare myself stupid, and to have a shitload of fun.”
In my favourite photo of Stella, she wiggles her trademark ruby slippers. But she absolutely does not look like she wants out of her wheelchair. She knows what it took this Dorothy so long to learn: “There’s no place like home.”
Dorothy Ellen Palmer is a mom, binge knitter, left-leaning Sherlock Holmes fan, retired teacher, and a disabled senior writer. L Her semi-autobiographical novel, When Fenelon Falls (Coach House Books, 2010), features a disabled teen adoptee in the Moonwalk-Woodstock summer of 1969. Her second novel, Kerfuffle, follows a Toronto improv troupe as they struggle to make sense and nonsense of the Toronto 2010 G20. This article is an excerpt from her memoir in progress, So Lame: My Fifty Years in the Disabled Closet.